GET INVOLVED
We Can Only Grow With The Help Of Others
We Can Only Grow With The Help Of Others
There’s something special about coming together around a shared purpose. In our OOKP Support Group, we believe everyone, patients, families, carers, professionals, and friends, have something valuable to contribute. Whether you’ve experienced OOKP yourself, cared for someone who has, or simply feel moved to help, you can be part of a community, making a real difference.
Getting involved doesn’t mean taking on a big role or having all the answers. It’s about showing up, offering support, and helping shape a space where people affected by this rare journey feel heard, informed, and supported.
We're more than just a support group; we're a community. Some people come to share their stories. Others attend meetings, help run a project, or simply lend a listening ear. Some people get involved online, spreading awareness or suggesting ideas. However you choose to be part of this, your presence makes an impact.
You might join one of our virtual coffee mornings or contribute to our newsletter. Maybe you’d like to help improve our website, suggest a service we haven’t thought of, or connect with other families in your area. Whether big or small, your involvement builds the group from the inside out.
Many of our ideas come directly from members — from group events to wellbeing sessions, from new resources to helpful guides. You help shape what we offer, and together we grow stronger.
When you join in, you're not just helping others — you're helping yourself too. You’ll meet people who understand what you're going through, gain a sense of belonging, and play a part in something truly meaningful.
It’s a chance to:
Be part of a national support movement
Connect with people who truly understand
Share your experience to help others
Help us grow, evolve, and reach more families
Find purpose, connection, and confidence
There's no expectations, no pressure — just an open invitation to bring your energy, ideas, and heart into something that matters.
Getting involved can be as simple as sending us a message. You might just want to say hello, offer feedback, ask to join a support session, or explore where you could help. We'll welcome you warmly and guide you through whatever feels right for you.
We regularly run online gatherings, welcome contributions for our website or newsletter, and love hearing from members with ideas. Your input helps us reflect what this community really needs.
Whether you’re full of ideas or simply curious, there’s always room for you here.
You don’t have to be a speaker, a volunteer, or an expert. You just have to care. Being involved could be as simple as joining our newsletter list, attending a call, or sharing your thoughts on how we can improve.
This is YOUR community. Help us shape it, grow it, and keep it alive.
If you’re ready to get involved — in whatever way feels right for you — we’d love to welcome you. Simply visit our "Contact Us" page, using the button below and choose your method of contact, then begin your message with "GET INVOLVED" and we;ll be in touch